The MAGIC Convention and all its wonder/knowledge

When you think of a convention you tend to think of a boring try and sell me stuff type of event. Like the kind you attended in high school where they tried to sell you on different types of schools and colleges. Not this one. The Magic foundation supports a network of families a persons suffering from a group of rare diseases including the one I suffer from, Hypophosphatasia. I was nervous to attend my first event, I wasn’t sure what to expect and I was worried it would be dull and clinical the way so much of medicine tends to be.

However, I was pleasantly surprised by all the things this convention had to offer. To begin with they offered scholarships for everything from hotel and travel costs to event fees and dinner. This is wonderful since it provides an opportunity for people with lower incomes to attend this event and network with others suffering the same disease as them. Because of this generosity I was able to attend myself on scholarship and it greatly reduced my stress level when it came to preparing for this since I didn’t have to worry about how to come up with the extra money. The next great opportunity they provided was a chance to speak with one of the leading experts of HPP Dr. Kathryn Dahir from Vanderbilt Center for Bone Biology. If you signed up you were able to sit and speak with this expert and her nurse assistant. I found this to be a rare opportunity since I do not live near any experts so I was able to ask a few questions and speak with this professional on my particular disease state, something I wouldn’t have had an opportunity to do normally. The next opportunity was a free dental screening by a well versed dentist on rare diseases and how they affect the teeth. I was very grateful for this since my own dentist, despite being very good, was unable to explain to me why I could not have the procedures done I wanted.

Like all conventions there was a trade room that had booths with different companies promoting their products. Though many of the booths did not pertain to me, and there was no booth for the product I use or my disease, there were still a few booths that I benefited from. Not to mention some of the swag they were giving away was universally useful, so needless to say I did walk away with a few beneficial products.

For those who traveled with children there were a number of services offered including a full staff of highly trained child care persons. They had field trips and parties and other various activities planned for the children which allowed the parents to attend the talks and lectures pertaining to their or their child’s ailments. If I had been there and a child I imagine it would have been very fun since some of the activities included field trips to amusement parks, scavenger hunts, dress up parties, along with a variety of games, give aways, and crafts.

The convention had several conference rooms for each of the diseases sponsored with refreshments and breaks after each session. The organization brought in specialist to speak on everything from dental issues, medical issues, dietary concerns, and durable medical equipment and exercise. Most of the lectures were well put and well rounded made to address those suffering from all ages. Some were a bit hasty and not as good as others but over all the information was beneficial and I was able to make contact with some great specialists who can help provide my medical and dental professionals as home with more current and relevant information.

There were mix and mingle parties for both the men and the ladies, to allow different people from different disease groups get to know each other as well as allowing time for networking within ones own disease group. This is one of the things I most benefited from since when you live with a rare disease it can become very isolating when you never make physical contact with others in similar situations. There is always a digital presence and community, but that only goes so far to console someone suffering otherwise alone.

To top off all the great things this convention provided the organization also offered dinner for two of the three nights we stayed there. This is the only area I can honestly say was lacking. The food was geared solely towards children and there was no consideration for persons with any type of dietary restrictions. There were multiple buffet lines and I feel it would have been much nicer if at least one of those had offered more adult and nutrition conscious options. Despite this downfall the whole thing was a success and a lot of fun.

I was lucky enough to meet many of the people at this convention and really enjoyed taking pictures as many of disease sponsored primarily affect children, so there were a lot of cute little faces to capture on camera. The follow are some of the images I took.